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I’m not totally sure why I have decided to write this……maybe it is to share the merits of cycling that so many of us appreciate on a regular basis……maybe it’s to let others who are going through similar know that there is hope…..maybe it’s a little counselling for me……maybe it’s because deep down I am proud of how far I have come in a relatively short time…..or maybe it is to express my sadness of those who have never cycled or those who berate us saying we shouldn’t be on the road when they don’t know the benefits to the individual!

What ever the reason, here is my story and why cycling is such a big part of my life:
I have suffered from tinnitus (ringing in 1 ear even though there isn’t an external source) for about 10 years. I had always put it down to night clubs and a slightly over exuberant lifestyle when I was younger. About 6 years ago I woke 1 morning and the tinnitus had dramatically increased in volume, again I thought it was because I was out the night before however as the days and weeks went on there was no easing up of the symptoms.
I finally headed to the doc’s and they did all the usual ear drops, anti congestion tabs etc but these had no effect.
After another 3-4 months I was finally sent to a ENT specialist who sent me for an MRI scan. The ENT consultant was pretty useless and didn’t give me any indication what could be the cause and what they were looking for, however Google is a powerful source and information and I suppose deep down I know what could be 1 possible outcome….and there is was, 1 weeks later I was called back to see the specialist telling me I had a brain tumor.
I suppose 1 blessing was it wasn’t one of those pesky cancerous types which is always a bonus, nevertheless there was something in there that shouldn’t have been and it needed out. The type of tumor was an Acoustic Neuroma which grows on the hearing nerve. As it gets larger it has nowhere to go but in towards the brain and brain stem squashing everything it comes in contact with, hence the hearing issues.

There was a six month wait for surgery, but 5 years ago this August I went under the knife for it to be removed.
I knew all the possible risks and possible outcomes of surgery. Apart from the obvious risk of someone rummaging in side your head, there were quite a few which I was told were unlikely but I needed to be aware of, these were hearing loss on the side of the tumor (90% chance…ok, so that’s a given, but I’ll live with that one), facial paralysis if they damage the facial nerve taking the tumor out (10% chance), Tinnitus (33% chance it’ll go, 33% it’ll get better, 33% chance it’ll get worse), Balance and dizziness (2-3 months a bit dodgy but will improve), the list went on but I have always been a glass half full kind of chap so ‘knew I had nothing to worry about!

All I can say is I have never ever experienced anything like it in my whole life and never want to again (and I have had some SHOCKING hangovers ☺ )

Following the surgery I lost most of my senses and felt awful. All I was told was that they think they got all the tumor out, I was drugged to the eyeballs I didn’t really know if I my face and hearing worked and if I had tinnitus. However as the days went on it soon became apparent that my positivity was misguided and unfortunately they had fooked my face nerve, destroyed my inner ear and that damn ringing was there….just louder…much louder!
As a result of only having 1 operational inner ear, it has to over compensate for the other not working. It’s like constantly being drunk, not just tipsy but hammered and I couldn’t stand without a stick about 2-3 months and I need 1 for walking for about 7-8 months.

It goes without saying that I was off work for a while. It ended up being 11 months in total and over all this time I was praying that the tinnitus would subside and the face would start working again and the dizziness would slowly get easier. None really improved and I needed 1 final operation to put a gold weight in my ride eyelid to help it close so I could get back to work.

Work was tough but my employers were good and took me back 1 day a week and slowly increased the hours over 3 months before I was back to full time.

If you have stuck with me this far, thanks! I’m just about to get on to the cycling☺

Before the operation I was a keen mountain biker however as my balance was so bad, even though I was probably 13-14 months after the Op, I knew I was no where near getting on a MTB and heading off road.
It was at this time that my employer started a cycle to work scheme. This kick started me into looking at bikes for the road to try and ease into a less technical type of riding.
If I am being honest, road cycling has never interested me….I saw it as boring! But, if it could help me improve my balance and get back to mountain biking I would give it a try.

Again, being honest with myself, it was a pretty bloody stupid idea. My first ride consisted of 5 miles around the estate I live on. I was ok travelling in a straight line but as soon as I turned my head to look over my shoulder I was almost off. Plus adding the sensation of hedges and things rushing past meant I felt so sick (inner ear issues).
That 5 mile ride was the last ride for some time, the bike went back in the shed for months and I not only assumed I would never ride a MTB again but that I had waste money on another bike.
After watching cycling clips on youtube I decided to give it another go. This time in the slightly safe environment of my kitchen! I bought some rollers as someone at work had recommended them as they new the issues I was having.
Weeks passed and I couldn’t quite muster up the courage to let go of the kitchen cupboard but then it started to fall into place.
I started with a few miles, then 5, up to 10 and final 20 miles on the roller.

It was time, the road beckoned for another try. I did the same route as my first trip…just 5 miles but it was a start. I still had the same issue of not being able to look over my shoulder as it completely threw my balance off kilter and I ended up swerving severely…..hmm, that’s not good. What with that and the added complication of only 1 ear meant I had no clue from which direct vehicles were coming from. Ok, another quick Google search and I found a number of discreet cycle mirrors.

I purchased bike-eye mirror and it transformed my riding giving me so much more confidence and meant I was much safer on the road.

Things were starting to fall into place. I was getting out on the road bike at weekends for an hour here and there and fitness was improving.
I still wasn’t up to cycling to work even if it is 6 miles each way. This was because since the Op, mornings have been terrible as I feel sick and really dizzy every morning (think it is something to do with the inner ear again and going from horizontal for several hours to vertical in a short space of time).

Then disaster, adding to feeling like shit, slight mental instability due to my facial appearance and the constant droning of tinnitus…the final nail in the coffin was work pressures increase and days became longer. I stuck with it for 3-4 months but in the end had to admit defeat. Almost in tears I took my boss to one side and said I couldn’t do it anymore, I need out. I was ready to walk out there and then but to be fair, work have been fantastic, they found me another job in the organisation that was less demanding.

The bike was back in the shed for several months until I got my head sorted again. I am not sure what the kick-start was but 1 morning I just decide to cycle in. It was hell! I felt awful all day but I vowed to cycle 1 day a week the following week. So it continued and I build up the days until I was cycling in every day.
Mornings have never got easier and the first few minutes on the bike there is always the underlying sick feeling but within a mile it has gone and I cycle rain or shine. On the odd occasion when I have to drive if I need to be somewhere after work my work colleagues can tell the difference in my. I am more lethargic, grumpier and less productive…..if that’s not a shining endorsement for cycling to work I don’t know what is!

Having clocked up the commuting miles and managed to achieve a 50 mile Saturday road ride it was time to dig out the mountain bike. I headed to my local trail centre (Cannock Chase) and gave it a go. It wasn’t as disastrous as I had thought, there were a few offs, but these were relatively controlled.
Again the weeks and months ticked by and the mountain bike was getting more use, afterall this was what I was passionate about. The road bike was purely a means to get back on the mountain bike…….hmmm, well that was the intention, however I soon started to find that I was choosing the road bike over the mountain bike. I am not total sure if this was because of convenience of not having to travel to trail centres or if I was becoming a roadie….but things were changing…I was even finding my first port of call was the Wiggle lycra section rather than baggies!!!

I have now been cycling to work almost every day for 3 ½ years. I am not sure what this says about me, but the cycle is the highlight of day. It makes me feel alive. It is the only thing that helps mask my tinnitus with the wind noise in my good ear. It is 22mins of bliss each way each day, so when I hear people say we don’t have any right to be on the public highway it infuriates me as this is not only my chosen transport but it is also my only mechanism of escape!

Up until a year ago, 4 years after the Op, I could manage no more than 50 miles on the bike. However since then my passion has increased (my mates and family would definitely call me a bike bore ☺ ), I have completed my first ever sportive which was 112 miles and 9000ft of climbs, I have ridden from Manchester to the lakes and back over a weekend and I am disappointed with myself if a weekend ride is less than 40 miles. I also use to plan all my rides to avoid hills, I now go searching for them!
I think it is fair to say that the road cycling bug has well and truly got me. The mountain bike hasn’t been out of the shed for months.
I am off to the lakes again soon and it would have been the ideal opportunity to take the MTB with me, but I have decided to take the road bike and try and concur Honister Pass…..well it’s rude not to!

Deep down I know that with my post operative ailments I will have many more relapses and down days as my mind isn’t always that strong. When this happens the longer weekend rides will slip a little but I know that the pull of cycling will help me through.
The enjoyment and camaraderie of cycling (in general) is something that has helped me feel this way and my slightly competitive nature has driven me to better myself and get up a climb slight quicker or make it a little further up the hill without standing up.

I am now actually looking forward to see what next year brings. I’m thinking the next target is 150miles in a day and a cycling holiday in France to TRY and beat Alpe D’Huez…lets see if it happens.

If you made it all the way to the end of this, thanks for staying with me and listening to my waffling.
If this helps just one person or stirs up similar emotions in others then it may have been worth it.
Just by putting some words down on paper has brought back so many memories, some good and lots bad…guess that means I still have a long way to go, but lets take 1 day at a time…1 pedal rotation after another.

Tim

11 comments

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FMOAB [253 posts] 2 years ago
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Well done, that's a great sucess story.

If you are looking for further challenges, you could think about joining Audax UK. A 200k run would take you to 125 miles and you could then think about taking on a 300k (about 170 miles) or more. Much cheaper than sportives, good company and sometimes good food included in the modest cost.

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Super Domestique [1596 posts] 2 years ago
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So pleased I read this thread. Well done and all the best for the future plans.
I know all too well the feeling of putting the bike away and thinking 'that is it' and 'never again' so you get a huge thumbs up from me.

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SideBurn [890 posts] 2 years ago
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This is interesting.... someone I know has just been diagnosed with this. They have had 'the scan' and are off to see the specialist next Thursday (10th of October).
I think they are hoping that the operation will be soon, straightforward and will resolve the problems....
Not sure whether I should show this to them

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behemothprocycling [43 posts] 2 years ago
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Top work.
As you may or may not have read I have also had a huge improvement in my life from getting back on a bike again, so i know how you feel.

I wish you all the best in the future, keep it up  1

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badkneestom [135 posts] 2 years ago
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Wow, what a story

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Tinternet_tim [117 posts] 2 years ago
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Thank you all for your kind comments. I was very hesitant about post this as I don't want it to come across as looking for sympathy or blowing any trumpets....Hopefully it just reads as my little story that others can either relate to or take something from. Going by the comments I think I succeeded (i hope) and it appears others are also using cycling to escape and cope with their own issues.

SideBurn wrote:

This is interesting.... someone I know has just been diagnosed with this. They have had 'the scan' and are off to see the specialist next Thursday (10th of October).
I think they are hoping that the operation will be soon, straightforward and will resolve the problems....
Not sure whether I should show this to them

SideBurn: Please reassure your friend that this is only my experience. The results of the surgery are extremely varied. I have read loads of good news stories where people were back to work within months and other than the hearing loss (most experience it) they had little other symptoms.
I would be more than happy to speak to your friend if they need to speak to someone before or after their consultation. I have learnt a lot along the way and would have most certainly done some things differently. I would happily share these experiences so your friend can decide how they want to proceed and what options are available to them.....they do have options!
Please contact me with a direct message on this site with contact details if your friend would like to me to get in touch.

Not sure where your friend lives, but I am based in the East Mids. If they are in the region then I would happily meet up with if they would prefer to have a face to face.

If my experience can help just 1 person who is going to go through similar then I am most definitely glad I took the decision to post my experience! Maybe it was fate and this is the reason I suddenly decide to write what I wrote  1

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skitza [94 posts] 2 years ago
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Great story and you are in my opinion a very brave,resolute fella, very best of luck with your challenges and the future.

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SideBurn [890 posts] 2 years ago
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Cheers Tim; I will pass the message on
I have sent you a private message

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helentinnitus [1 post] 2 years ago
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Hi Tim
What an inspiring story! I actually work for the BTA and signed up specifically to reply to you.

I don't know if you have been in touch with us at all in the past but feel free to give us a call on 0114 2509933 if we can offer any advice on managing the tinnitus or visit our website www.tinnitus.org.uk which includes a forum where you can chat to others with similar experiences.

I don't know if this would be of any interest to you at all but we have fundraising places in the London-Surrey Ride 100 in August next year which follows the Olympic road bike route. Drop me an email helen [at] tinnitus.org.uk if this is of interest or if I can help with anything else. No worries if not.

Regardless I would just like to say good on yer! You are managing remarkably well with what can often be debilitating syptoms.

All the best and keep it going!

Helen

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OldRidgeback [2554 posts] 2 years ago
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A truly inspiring story. All the best for the future.

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cidermart [486 posts] 2 years ago
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Excellent read and no doubt you are feeling, or should be at least, the cathartic results of sharing your story. Keep it up ‘Chapeau!’